Erin Jackson did not learn that her biological father was a sperm donor until she was 35. Until then, her parents had kept it a secret, as the doctor involved had advised.

That information, when it arrived, put Jackson’s entire life into a new perspective. “It was shocking, but it also made complete sense to me. It was probably the most transformational life event I have experienced,” said the Toronto native who now lives in California.

The first question she had after learning the truth was about the donor. And that is where Jackson, like many people who were donor conceived, hit a brick wall. There was no donor number, no health information; her mother didn’t even remember the name of the clinic she used.

“I wanted to know where I came from.”

Things have changed. Jackson, like thousands of donor offspring, eventually tracked down her biological father using a DNA website. She got in touch with him, although he does not want further contact, and also met a half brother, conceived with the same donor.

Donor anonymity, once a wall built around sperm donors, has largely crumbled, thanks to easy-to-access DNA testing. Almost everyone who wants to can find out who their biological father is, despite the fact that donor had often been guaranteed anonymity by the sperm bank they used.

There have been some cases of once-anonymous donors making contact with their biological offspring who have tracked them down through DNA websites. Often, that is not the case and donors might offer some health information but little more, or refuse contact at all.

While DNA technology might mean the end of donor anonymity, donor offspring say tough laws are needed to ensure their rights — including access to information about their health and genetic history.

“The basic human right to know where you come from should not be denied (to) people conceived through a medical procedure,” said Jackson who founded the group We Are Donor Conceived.

She and others say Canadian law needs to catch up to the new reality, to make sure the rights of the donor conceived are protected.

Donor offspring groups and individuals have increasingly become vocal about issues around assisted reproduction in recent years. In addition to an end to donor anonymity, donor offspring have called for strict limits on how many times one sperm sample is used to conceive a child. Some of them have found hundreds of half siblings — all conceived with sperm from the same donor. In surveys, most people who were donor conceived say the limit should be about 10.

In Ottawa’s high-profile Barwin case — the subject of a potential class-action lawsuit — 11 people have been identified as having allegedly been conceived using Dr. Norman Barwin’s own sperm. He was their parents’ fertility doctor.

Neither Canada nor the United States, which is the source for most sperm used in Canada, has laws banning donor anonymity or limiting the number of times a sample is used. Sperm banks are largely self-regulated, a situation that has led some to refer to the industry as the “wild west.”

Outside North America, things are different. Countries including the U.K., Australia and much of Europe, ban donor anonymity and regulate limits on sperm use. In Australia, it was a group of donor-conceived children who successfully lobbied that country’s parliament to get donor anonymity removed. Parliament did so, including retroactively.

In the U.S. and Canada, advocates say stricter regulations are long overdue.

“Anonymity is the biggest issue for donor-conceived people,” said Jackson. It is a legacy, she said, of the history of donor conception, which was built on secrecy and shame. “And anonymity is baked into that.”

Jackson said she is surprised Canada has not followed other countries that have banned donor anonymity (in many cases requiring information about the donor to be available when the child turns 18). In fact, a donor offspring’s right to know where they came from was the subject of a lengthy court battle in British Columbia that ultimately resulted in no change.

In Canada, regulations governing donor sperm are largely limited to screening for infectious diseases and ensuring safety. Donors can consent to having their information known, but may also remain anonymous.

Although Canada does not allow sperm donors (or egg donors or surrogates) to be paid. most of the donor sperm used in the country comes from several large sperm banks in the U.S., where they do pay donors.

There is a move to change that. Liberal Montreal MP Anthony Housefather has introduced a private member’s bill that would allow payment for sperm, eggs and surrogates in Canada.

He said other regulations around the use of donated sperm — including anonymity — are provincial, not federal, issues. Housefather argues his bill, should it become law, would open the door for tighter regulation by the provinces, including banning anonymity, because it would create an industry in Canada that barely exists now (the majority of sperm samples used are imported from the United States).

That is something Olivia Pratten, now 36, has long fought for. The 36-year-old from Vancouver fought for the right of donor-conceived people to have information about their own genetic backgrounds in a case that went all the way to the Supreme Court of Canada before an appeal was rejected.

Today Pratten, who lives in England, is both exhausted by the battle for the rights of donor-conceived children and skeptical.

She grew up knowing from a very early age that she had been donor conceived, but was unable to get information about the donor or her health history. The records around her conception were destroyed, but she said the court battle was for others like her.

Her case, which took five years, ended in 2013. Pratten calls it a “joke” that Canada still doesn’t have laws to help children conceived through assisted technology.

But she says there has been a major change around the question of anonymity for sperm donors.

“I don’t have to talk about it anymore because they can’t promise (anonymity for donors). That is what has changed.”

Wendy Kramer, the Colorado mother who founded Donor Sibling Registry with her son, who was donor conceived, says flatly that donor anonymity is over.

Her son — who was born in 1990 — is believed to have been the first donor conceived person to track down his biological father using DNA information.

“He might have been the first, but he is not the last. People are figuring it out.”

In her son’s case, he has met his biological father and developed a close relationship with his paternal grandparents. He has also been able to gather valuable family health history.

Kramer is among those pushing for strict limits on the number of times a donor is used to conceive a child. That is something most businesses say they do, but something that DNA tests, identifying dozens of half siblings in some families, have demonstrated to be untrue.

Limits, says Kramer, are crucial.

“If you have a genetic disease in a traditional family, the father might pass it on to one or two kids. When you have a donor with 100 children, you are talking about an epidemic.”

Will there be changes in Canada? The issue has been debated for decades, notes Pratten.

“There has been a shift in the conversation, but there is still a long way to go.”

Jackson says she hopes the growing awareness of the rights of the donor conceived, coming from websites such as hers (We Are Donor Conceived) and other information, will bring change.

“I am interested in public awareness. I think that is where legal change starts.”

This Week's Flyers

Comments

We encourage all readers to share their views on our articles and blog posts. We are committed to maintaining a lively but civil forum for discussion, so we ask you to avoid personal attacks, and please keep your comments relevant and respectful. If you encounter a comment that is abusive, click the "X" in the upper right corner of the comment box to report spam or abuse. We are using Facebook commenting. Visit our FAQ page for more information.